MDS Becomes AML - I Am Da Count, Ha-Ha-Ha

Today's counts:

• Platelets: 19,000
• Hemoglobin: 9.1
• White Cells: 0.3

I'm beginning to give up on tracking these numbers. Or, at least seeking logic in them.

The red cells didn't change. Okay, we didn't transfuse blood yesterday, so that makes some sense.

The platelets rose reasonably. Makes sense, since we did transfuse platelets yesterday.

The whites? Nothing. Despite Neupogen infusion. I mean, c'mon whites. The last time we Neupogen-ized, they jumped to more than 13.

It's enough to drive you crazy, this numbers tracking. Worse than when, as kids, we daily tracked major league baseball players' batting averages. My god, if Willie Mays dipped below .300, it was tragic. What would've we made of white cells hovering just above zero?

Can they go below zero? Can't you just see it? Hey, you're sub-zero, man. That's cold.

You know I'll be asking Dr. O about this when she arrives here today. Maybe she'll zap me with multiple Neupogen doses to really slap those whities around. Somebody's gotta wake 'em up.

Ah, never mind. I think I'll go see what David Wright's spring training batting average is and compare it to Willie McCovey's 1965 in-season batting average while I sleep through the golf coverage on TV this afternoon.

That makes about as much sense as these cell numbers do, but it oughta take my mind off the blood.

MDS Becomes AML - You're Not Going Anywhere, Mister

Yesterday's counts were:

• Platelets: 11,000
• Hemoglobin: 7.3
• White Cells: 1.6

Today's counts are:

• Platelets: 6,000
• Hemoglobin: 9.1
• White Cells: 0.3

Initially, these counts were alarming. What the hell was going on? I thought they were supposed to start coming back up by now.

Turns out we'd all miscalculated. Even Dr. O.

We were a week ahead of ourselves. The counts should be bottoming out right about now, and starting back up early next week. This is a three-week process; not a two-week process, which I had somehow convinced myself it was.

Dr. O had lost track of when we'd started. But, when Penny and I corrected her (it was a week ago Monday), she relaxed, saying, "Oh, then we're right on schedule.

"This treatment is actually more intensive that the initial one, even though you get the drugs on fewer days. The drug is stronger and the dosage larger." It bottoms out at about 15 days.

Maybe it's a good thing I didn't know that. If I had, I might've just stayed home.

As with January's treatment, home is beginning to seem like a mythical dream, a fantasy place that's far away and unattainable. Oh, to be able to walk from room to room, floor to floor; to be able to wander into the kitchen and to open the refrigerator door just to see what's inside; to eat real food at a real table; to luxuriate in the decision of which TV to nap in front of; to have commercial-free movie channels to watch.

This is wearing on me. The room is a small universe, made smaller by the frequent need to close the door to shut out ambient noise. Cleaning ladies yelling orders at each other; my next-door neighbor's TV blasting in a desperate effort to penetrate her deaf ears.

"It's going to be a beautiful weekend," Laina said the other night.

"Doesn't affect me," I replied.

Okay, okay—I know that in the end, this will all be worth it. Still, when you've largely confined to a small room, living a daily life whose few variations are comprised mostly of what medications are being pumped into you, patience is sometimes hard to muster.

Yesterday, between two bags of blood transfusion, I showered. Lord knows I needed it. I'd begun to stink in my private areas like a homeless person. But, the best part? I left the room independently to do it.

I shoulda stayed all night in there.

MDS Becomes AML - Still Here

No post yesterday, largely because I had nothing to say.  For the record, yesterday's counts were

• Platelets: 18,000
• Hemoglobin: 8.2
• White Cells: 4.2

Not nearly the improvement I'd hoped for.

And the fatigue continued. But, I'd attribute that more to a terrible prior night's sleep that resulted from a bad time waiting for a platelet transfusion.

Without going into details, suffice it to say that we waited 9 hours for the platelets to show up, and by the time they did I'd gotten impatient and pissed off enough to raise both my blood pressure and heart rate to ridiculous highs.

The adventure did illustrate perfectly how anxiety and anger have direct effects on one's vital functions. It also made me wonder how my father lived to be 90. He could "get his panties in a bunch" without much provocation.

Me, it takes a lot to get me going. And, when I woke up the next morning, I was still annoyed. The good news: I've discovered that watching meaningless spring training baseball on TV pacifies, distracts and relaxes.

No blood counts yet for today. Will report them later.

MDS Becomes AML - No Platelets, No Energy

Today's counts:

• Platelets: 6,000
• Hemoglobin: 9.1
• White Cells: 7.8

Six thousand isn't a record low for platelets, but it ain't far off.

No platelets means no energy.

So, today I've slept.

While I've waited four-plus hours for the platelet transfusion bag to show up.

Even Ms. I.V. Pole is wondering what's going on.

There have been better days.

But, also worse.

MDS Becomes AML - Blood Counts Drop, Mood Drops

As expected, the counts continue to descend.

• Platelets: 12,000
• Hemoglobin: 7.9
• White Cells: 11.8

Although Dr. O promises that today is "bottom out" day, it's difficult not to wonder, the doubt exacerbated by the fatigue factor.

I was sound asleep by 8:30 last night, awakened by the nurse at 9:45 to be fed meds and be disconnected from Ms. I.V. Pole and, apart from the usual multiple, fluids-fed, pee-trips to the bathroom, I slept straight through almost to 7. This morning my butt is dragging.

It's gotta be all about the counts.

But, as the counts and energy drop, so too does the mental set. By day's end yesterday, discouragement predominated. All the nasty, niggly little discomforts were poking at me like rambunctious older kids piling on to jab and tickle a little guy.

Avoiding negative contemplation becomes harder. My physical world has been reduced to this room, and the occasional stroll down the hall. Ironically, my hour-to-hour care needs are few, giving me whole clumps of time to sit alone, the primary human contact being whatever complaints, crises or staff gatherings I hear drifting in from outside my door.

One's world shrinks. And with it, one's focus.

There's a book review in the NY Times this morning of Lionel Shriver’s new book, “So Much for That”, a novel centered on families with health issues, cancer in one character's case. The reviewer writes that Shriver...

manages to convey Glynis’s fear and bewilderment and isolation. What it’s like, especially as her illness progresses, and the chemo takes more and more of a toll on her body, to have to stop thinking about the future and simply focus on getting through that afternoon or evening. What it’s like to see others jogging or working out when it’s a struggle for her simply to walk up the stairs to her bedroom. Disasters reported in the morning newspaper, relatives’ difficulties and complaints, the weather outside that day are all equal to Glynis:

“There were no big things and little things anymore,” Ms. Shriver writes. “Aside from pain, which had assumed an elevated position of awesome sanctity, all matters were of the same importance.” 

No—I haven't reached this point. Yes—I remain terribly (absurdly?) optimistic. But—sometimes the demons gather round the door and try to sneak in, as happened when an in-depth discussion about hospice care for one of my neighbor patients broke out just outside my room.

How not to think, "Is that where I'm going?" One must make a concerted effort to shunt out the notion.

I still can. And do. Which is why the trip to Idaho takes on such importance. Because it symbolizes still being able to function, an opportunity to actually get out of this room (or, by extension for post-hospital release, out of the house) and interact in the world at large.

That is large.

MDS Becomes AML - More Top Notch Hospital Socks

The word came down in no uncertain terms: those socks need washing.

"No! No!" I argued. "These socks are way too comfortable and, besides, they're still the hit of the hospital."

It could've gotten ugly.

But—wait. Leena the Elder rode in to the rescue like the U.S. Cavalry with . . . replacement socks.

The legend continues. (Photo by Laina Kaplan.)

For them what tracks 'em, today's counts:

• Platelets: 21,000
• Hemoglobin: 8.2
• White Cells: 13.6

Whoa! Look at that white count. That's Neupogen in action. Dr. O says we're looking good, tracking right, and has high hopes that no transfusions will be necessary.

Me, too.

MDS Becomes AML - Hair Today, Gone Tomorrow?

A funny thing is happening on the hair-loss front. Or, perhaps better to say hair loss/gain. The stuff is disappearing from my head. But, it's reappearing on my face.

True, the beard is regrowing in spots and patches, and it's hardly visible in places, but sure enough there it is.

Meanwhile, while there's a thin covering atop the cranium, the sides are totally bereft of foliage.

Why is this?

We conjecture that the head hair loss results from sleeping. The sides of the head rub on the pillow. The top does not, since I don't sleep standing on my head.

But, why the beard creeps back to life is something of a mystery. We assume it, too, will disappear—as it did last time—as the days wear on. But, for the moment, well, there it is in a nascent form.

In truth, I have no idea what it means. But, I'm taking up a new nickname for the duration of this phenomenon. Just call me Patchy Face Baldy Head.

For them what tracks 'em, today's counts:

• Platelets: 52,000
• Hemoglobin: 9.2
• White Cells: 3.7

Not bad. But, what's up with the hemoglobin? It's actually gone up.

Who knows? Maybe that's why the patchy-face thing is happening.

MDS Becomes AML - Counting Your Days Away

This morning I woke up waxing philosophic in a kind of existential way. I realized I'd been clock watching and counting the days.

• A few more hours til the next chemo.
• An hour til the current chemo is done.
• Today's the last day of chemo.
• Just another week til I'm out of here (hopefully).
• Three more weeks til the next chemo.
• Another six weeks and we might have a bone marrow donor.
• Four to six months til we come out the other side and get healthy again.

I haven't counted hours, days, weeks and months like this since I was in high school, wishing the school year would end.

The problem with that (as I realized way back then) is simply this: when you count the days away—even if you're counting away time filled with pastimes you'd rather not be doing—you're counting your life away.

As I figured out during adolescence, I must remember to make the most of my time, regardless of having to fill it mostly with things I don't want to do.

It's a bit more difficult to do that now than it was way back then because the time frames involved are more open-ended. In school, you knew when Christmas vacation, spring break and end-of-school-year were coming. Here, we don't know exactly when the next phase is coming. Which leads to much conjecture. And clock watching.

So? What to do?

• More reading.
• More writing.
• More work.
• More focus on doing what I can do right now.

All while keeping my eyes on the ultimate prize.

I can do that.

Okay—here's today's daily tally:

• Platelets: 87,000
• Hemoglobin: 8.7
• White Cells: 4.2

Counts are going down, as expected. But, looks to me like there's no reason to think they'll bottom out too low. The white's will dip underneath the normal range (4.0), but we shouldn't be looking at anything like the dangerously low hemoglobin and platelet numbers that we'd experienced last time.

All good.

Now, there are potentially just eight days left til I might get out of here. But, who's counting?

MDS Becomes AML - Good Counts But Endless Treatments?

Business first (as my friends at Continental Airlines would say).

Today's counts:

• Platelets: 109,000
• Hemoglobin: 9.5
• White Cells: 6.1

Those are pretty good counts. With one more day of chemo on the schedule, the question, of course, is how low will they go? Ah, only time will tell.

Conferred with Dr. O this morning on how many of these consolidations we'd actually have to do. Basically, it sounds like we keep doing them until a morrow donor is found. So, chances are I'll be in here for two-week sessions, after two- or three-week home intervals, for the foreseeable future.

C'mon donors!

It is a bit strange to be building my life around indeterminate hospital visits. One would like some respite from this routine. Which is why the transplant, as it's the only chance for any kind of respite. But, somehow imagining myself doing these two-week stints for another three or four months can be onerous.

Especially since it's snowing outside, and I should be playing in it.

And, especially since I feel fine. I'm chipper, have good energy, am getting work done, and have been downright outgoing with all the staff. Much more outgoing than normal.

Probably the extroversion is generated by the socks.

The snow is complemented by e-mail alerts announcing great powder skiing everywhere from here to California. Which just makes me more determined than ever to get back out there.

"Think Snow" has always been a good mantra.

MDS Becomes AML - You Can (and Sometimes Must) Go Home Again

Back in the hospital. It's like old home week here. Everybody knows my name. Everybody remembers what the problem is and what I'm here for. Even the guy who wheeled me down to x-ray remembered me—as did the woman who coordinates the order in which patients go into x-ray. She greeted me enthusiastically, saying "We've met!"

"Several times," I replied. With a smile.

This place is rapidly becoming my second home. Not really what I had in mind. I've always wanted a second home in the Berkshires or Vermont. With five or 10 acres, if possible. And a mountain view. Oh well.

It's an odd feeling to come here while feeling fine. When I arrived last April and this past January, I was really sick and I knew it. There was a logic that said, you need to go to hospital.

But, here I am, almost hairless but feeling rather chipper, and basically I'm saying to my keepers, "Sure fill me full of hi-test and make me feel miserable. And, while you're at it, feed me some of that god-awful food you serve up around here. Why not, I'm feeling great."

Luckily, Penny and Laina will take turns bringing in dinner. There are limits to my culinary tolerance..

The biggest news so far is my socks. Hand-knitted for me by Leena-the-Elder (namesake of Laina-the-Younger) they're bright red-gray-pink striped woolen foot covers that fit perfectly and—Penny is glad to see—don't cut off any circulation at the ankles. (When I get a camera in here, I'll publish a photos of them.)

Everyone—and I mean everyone—has commented, "I love those socks."

Whilst I was waiting down in x-ray for a return push to the room, an older woman (well, older than I) was wheeled in and parked next to me. Her knit hat gave her away as a cancer patient, too. The first thing she said was "I need a pair of socks like those!" a chat followed about the need for warm, loose socks  which, after I complimented her hat, morphed into long discussion about how to keep one's head warm when you're not accustomed to being bald or semi-bald.

My newfound friend related how she wraps a turban around her head for sleeping at night, but "sometimes it comes undone and it wakes me up immediately. It's cold!"

I agreed. Laying one's head on the cool side of the pillow is a whole other experience. But, I've assimilated well enough now that I no longer wear my cousin Susan's knit hat to bed.

So, the deal here this time is this:

• two hours of chemo at a 12-hour interval on Monday, Wednesday and Friday.
• Tuesday and Thursday off
• discharge as soon as my counts return to something normal and my GI functions show no ill effects.

This schedule caused a big sigh of relief. What I'd understood was two 12-hour infusions on the three days, which would've meant being tied to my five-wheeled friend (a.k.a. Ms. I.V. Pole Queen of Chemo) for all of the three days. This way, I'm Pole-free most of the time.

Oh freedom.
Oh-oh freedom.
Oh-oh freedom over me.
Before I'll be a slave [to Ms. Pole], I'll be buried in my grave
And go home to my lord and be free.